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I've tried everything, I think I'm dying.

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#1 WinterStorm

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Posted 02 January 2018 - 12:53 PM

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I'm sad it's come to this, because I really didn't want to have to rant on the internet about my problems, but I've tried everything else.

I also feel like it's good to type it all out there, as a record, so that if I do end up dying, someone in my family can read this and use it to sue the crappy negligent doctors later.

 

If you get to the bottom, there's a unicorn waiting for you, and my thanks.

 

If reading this you think you know what I have to do, please tell me. I need help.

 

I live in Berlin, Germany, apparently a place with the best medical care in the world. Unfortunately that has been far from my experience.

  • GPs are powerless and just write you pieces of paper and send you on your way to find your own specialist and wish you good luck with a shallow smile.
  • Specialists demand months (literally, 3 to 4 months) waiting times and when you finally get to see them they treat you like ###### and do as minimal work as possible to justify the large expense they debit from the medical insurer. I've seen 5 gastroenterologists, not one of them has even put their hands on my stomach physically. 
  • Hospitals are only interested in you if you're at imminent risk of dying (which makes sense). So they won't be any good to me until my systems have shut down (and if the colour of my poop today is anything to go by, apparently that may already be happening).

7 months ago, you would consider me a healthy 33 year old male. 63kg. No drugs, no smoking, no alcohol. I was a vegetarian mostly. Exercised a few times a week. Slept well. Ate well. Pooped 2 to 3 times a day without issue. I was very healthy.

 

Then I started to get sick. And now I am 52kg, unable to sleep, can't exercise, no regular pooping, can't eat most foods, and I'm losing the will to live.

 

As a child

I always had stomach pains and cramps. Sometimes so bad I'd end up in hospital and they'd be searching for appendicitis. But never found it. And then after a day or two things would calm down and I'd be bruised and battered, but able to walk again and eventually eat and return to normal. This would happen a few times a year. My parents thought it was brought on by stress. I remember it feeling like contractions. Later I had a colonoscopy to search for crohn's, and it came back negative. The doctor said it was probably some form of bowel intussusception and that it was serious, and if it happens again, to return to hospital. But whenever I'd get it, the hospitals would be full, and just send me away after checking it wasn't appendicitis. In my adult years things started to calm down and the last time I remember having this specific pain was about 28 years old. Not since then have I had the problem.  I mention it only in case someone thinks it's important. I ate normal foods growing up. No one tried to suggest I should stop eating anything in particular. So I ate wheat, and sugars, etc. I was never fat.

 

Early symptoms:

In my early 30's, I started eating mostly gluten free, and no wheat, as I felt this would reduce the chances of the stomach problems coming back.

 

Now I'm 34, and about 7 months ago, no matter what I ate, I'd get very bad bloating on the bottom right section of my bowels. It looked like an alien was trying to escape from under my skin, just in that one spot. The gas smelled like rotten eggs, and was constant, it was also very painful because it felt like it couldn't get out easily. Like it was in the wrong spot. This worried me a lot because I typically was never a very flatulent person, and I whenever I did pass gas, it would never smell bad (sure not like roses, but certainly not bad). So this bad smell really troubled me, because my diet hadn't changed, and I typically am a very routine person when it comes to food. The gas was so bad, that I was farting every couple of minutes, and this kept me awake all night. It also made it impossible for me to eat out with friends, or do anything in the evenings with anyone.

 

I started to eliminate foods, thinking it might have been some sort of reaction to something I was eating. And when that didn't work, I tried specifically eating only certain things. I got the diet down to rice milk, gluten free corn flakes, banana, and eggs.  That's it. I ate this for 4 weeks. It didn't help at all. I was rapidly losing weight.

 

I saw a few gastroenterologists, they did blood tests and stool tests and told me everything was normal, slight higher levels of inflammation, and that I probably had IBS. and they sent me on my way. I went to another city in Germany just to meet with a gastro there, hoping it would be different. They did an ultrasound and a dye contrast scan of my bowels to check for cancer or something sinister, and said that everything was normal. They prescribed buscopan and rest.

 

I wasn't able to sleep because of the pain, and the gas, and obviously the buscopan wasn't helping. I started to go crazy from lack of sleep and food. I googled the symptoms myself and somewhere someone mentioned SIBO, and I thought that it was probably that, so I immediately went on the SCD/FODMAP diet. Strictly! 

 

My diet was only:  Chicken Breast, Eggs, Salmon, Tuna, Ruccula, Peanuts, Mandarins (1 per day), and homemade 24 hour fermented yogurt. I was also drinking ginger shots once a day, and using oregano oil in water in the morning (2 drops). I ate nothing else.

 

It didn't help. It felt like that if it was SIBO, the bacteria had grown too powerful over the months, and no amount of diet managing was gonna kill the bacteria. They had won the war. 

 

SIBO self diagnosis & treatment:

I tried to see doctors here about SIBO, none had heard of it, and wouldn't help me. I showed them articles published in famous gastroenterological journals about SIBO, they all told me I couldn't have antibiotics for IBS and refused to help.

 

I went from doctor to doctor. One day I saw 7 in a row, begging them, crying, to give me the antibiotics. "What's the harm? If it helps, it means I have SIBO, if it doesn't help, it was a useless prescription and who cares?"     no luck. 

 

I went black market. I couldn't get rifaximin, so I tried cipro. 1000mg per day, and it worked.

 

Within a week, the gas symptoms stopped, and slowly over 2 months, the pain and cramping subsided, not to zero, but much much less. 

I stayed on the strict diet for 2 months, and added kefir milk (home made from kefir grains).  Things started to improve. I could sleep. The gas didn't smell anymore, and subsided, and my stools went back to 2 poops a day, somewhat normal in texture.

 

The bottom right area where I used to get the bloating felt "funny", sort of a sharp dull pain, but not so much as compared to the past. I convinced myself that it was some sort of malfunctioning ileo sequel valve, and that it was healing slowly. That's what I told myself anyway.

 

VSL3

A few days before christmas, I read about VSL3. A probiotics powder that people had had some success with in preventing the symptoms of SIBO. So I bought it. 90 euros for one month course. And started to take it. Then christmas came, literally.

 

Christmas Cake and relapse: 

Nothing happened immediately.  I was also eating different foods (goose, beetroot, dumplings etc). My family offered me a piece of homemade apple cake.  I ate it. It was awesome. Apart from the cake, I did my best to avoid sugars, because I knew that they feed the bacteria.

 

I became constipated and when I did manage to pass stools, it was lots of little small black stones. Very very odd. I wasn't sure if it was related to the cake, the food, or the VSL3. This went on for days. little black stones for poop, very hard to pass. I googled about constipation symptoms of vsl3 and found nothing. If anything it seems they use vsl3 to treat constipation! so I have no idea what's going on there.

 

I got home after christmas, and returned to my strict sugarless diet, and concerned about the constipation, I stopped taking the vsl3. I'd been taking it for 9 days in the morning.

 

Last 5 days of hell:

I started getting ill about 5 days after christmas. Stomach cramps. Fever. Headache. I lost all desire to eat, even to drink water.

For 3 days I ate almost nothing (two oranges and a few cups of water). The water tasted like sucking on a coin. I tried to eat an egg and it had no flavour. I was convinced I was dying. I was going to go to hospital, but it was new years eve and so many people here blow themselves up with fireworks and the hospitals become overrun with burns and missing fingers. So I knew if I went, they'd just send me home.

 

  • The first day of feeling this way, I pooped the black stones.
     
  • The second day, I had diarrhea and pooped brown goo water. And then I started getting the gas back in the bottom right area of my intestine. Also I started to pass gas, and the smell off rotten eggs returned.
     
  • The third day, I pooped nothing. And just didn't move. The gas and bloating was still there in the bottom right area of my bowels.
     
  • Yesterday, I managed to eat a piece of chicken breast and a mandarin. I made some electrolyte water from salt, baking soda, and an orange. Gas and bloating still there. Slight energy lift.
     
  • Today, I pooped a normal texture poop, bright white/yellow. Gas and bloating still present.
    The internet says I should be really worried about white/yellow poop. And that's never happened to me before, and considering only 5 days ago I was pooping black tiny stones, I'm concerned about how much has changed so quickly and I have no idea why.

 

The christmas cake was good, but could it really have done this much damage to my system?

 

I'm now at the point where I don't know what to do. This can't go on. No doctors here will help me.

 

My life has become so small, and so painful, and I don't know what to do to make myself healthy and strong again. Could one piece of cake really cause this much damage to my system? Or was it the vsl3? or stopping the vsl3? Was it the weird stone like constipation? Or could it have been some poisoning or stomach virus? I have no idea. 

 

It seems I'm back to square one. I weigh 53kg, and I'm miserable. I am a shadow of my former adult self. I feel like I'm dying slowly, and until my entire body shuts down, the hospital and specialists won't help me. This is my desperate call for help, for anyone to tell me what I'm supposed to do to survive this?

 

Sorry about the rant, but I had to tell someone and it helped a little to type it all out, so that what's happening to me is recorded somewhere.

 

If you got this far, here is the unicorn I promised you, and thank you for listening. I appreciate it.
unicorn-face.png


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#2 flossy

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Posted 03 January 2018 - 11:18 AM

This was a really good post, I thought. 

 

Have you been tested for food allergies and/or food sensitivities?



#3 Christine21

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Posted 05 January 2018 - 11:18 PM

Hi Winter Storm, what a lot you have been through!

Just guessing a wee bit here, but you were doing well on the ab's, then had the Christmas lunch which was quite a big diet change, possibly causing constipation, little black stones = sheep poop? Maybe?

Then diarrhea after the stone poo created anxiety perhaps?

You may have just picked up a stomach bug to make you feel so unwell, and then after days of nothing but an orange and some water it makes sense that you pooed that colour. 

The gas and bloating thing sounds quite odd, but I do know that when my weight was at it's worst and I was down to 40kg that you could basically see and feel every bit of everything that was going on in my stomach and bowel.

It did nothing for my anxiety I must say.

Have you tried anything over the counter like Rescue remedy or similar that relaxes you and helps you to not worry about it (I know, it's a big ask) and the only reason I say that is until my 40's when I finally got diagnosed as having quite a good full on anxiety disorder (food and mainly vomiting related) I didn't think I would ever be able to eat or have a normal life again, but I did.

And I do.

And sometimes things flare up and I worry quite a bit, but nothing like I used to.

I really hope you can get some help, I would try and stay very calm in the Dr's rooms, you shouldn't need to beg or plead for meds, just state that you are worried about your IBS (that you know you have) that it's making you very anxious, and you are hoping they could explain some of the things that have been happening. 

Good luck, please don't give up, I never ever believed that so much of my bowel discomfort was actually to do with anxiety. 


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#4 vincentatkins

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Posted 17 January 2018 - 02:15 AM

Hi WinterStorm.  Very similar story to mine.  I'm 42.  Diagnosed with SIBO-C a few months ago, though I think I've been suffering from it to varying degrees for a very long time.  Last 7 months have been total hell, survival mode.  Many, many trips to the ER, near death-like experiences, they do nothing.  Had tons of tests.  Seeing a naturopath (who diagnosed it) but still struggling.  My thyroid is subclinical hypo so I'm on some medication for that.  But the main thing is the SIBO-C.  Trapped gas in that right (illeocecal valve) area, horrible abdominal pain to the point of feeling close to death, and prolonged, almost every day/night.  Some glimmers of hope and improvements now and again, but mostly I feel with weight loss, lack of appetite, unbearable pain driving me out of my mind, losing who I am, who I was, not able to do anything, not able to work, it has gone on so long I do often think it would be better to be dead.  Now when I get a slight break from it, I am so worn out and lost I don't even know what to do.  Have lost the will to fight.



#5 vincentatkins

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Posted 17 January 2018 - 02:47 AM

2 things that helped tonight: playing and singing (badly) If by Pink Floyd, and eating fresh pineapple.  Recommend one or both!  Also boswellia extract may be of some benefit.



#6 Frenchneedyou

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Posted 17 January 2018 - 04:30 PM

Hi, i will give you some tips to look for (keywords):

SIBO and breath test fructose, lyme, candida, heavy metal, leaky gut, Capsule endoscopy to check the little intestin for crohn's, food intolerance, thytoid

Your country is the best from eu regarding medecin. If gastro and generalist fail, go to a naturopath. Look on internet who is good at what they do in your country.

Its important to know exactly what is your problem(s) to take the best cure

 

 

Hi, you should seek for specialists before doing anything. You have to know what you're fighting against. If you do know, you will have a better threatment and you will feel a bit better moraly.

Because knowing what you have exactly and what do you to fix it is the best gift you can have when you're sick.

Ok, this is my bible of every thing i know:

 

Ask to check for:

-Colonoscopy and Endoscopy / Fibroscopy

-Capsule endoscopy

-Test stool for culture and sensitivity, ova and parasites, and C. difficile

-Urinary metabolites analysis

-Gluten and lactose intolerance check

-Functional coprology (Check for calprotectin / fecal elastase / fecalogramme (not sure in english. It does Macroscopic and microscopic examination stools, ph, determination of lipids...)  and steatorrhoea)

--Ask for a complet test for your thyroid (like Hyperthyroidism).

 

Then:

-Breath test fructose

-'Leaky gut' test (permeability intestinal check with lacticol and mannitol, breath test, zonuline, urinary peptides, urinary Indoxyl sulfate, D-Xylose test)

 

If you have a Leaky gut, be carefull because you could have more because of it:

-Check your teeth, especially if you have fake teeth. It could be poisoning.

-Food intolerances IgG

-Candida antibody blood sample (Candia 5)

-Candidose Serology

-heavy metals blood test (or better technic like hair sample) ESPECIALY IF YOU HAD HAIR LOSE. THIS IS NOT NORMAL

-Lyme Disease (ELISA and Western Blott (or better) even if ELISA is negative)

-Check for Infection/co infection (maybe see some one specialist with this. Like an hospital service dealing with this).

 

(PPI doesn't help because you have more leaky gut with it)

 

Because having a permeability intestinal give many different symptoms. Basicaly, every thing pass to your blood and your body immunity fight for it or die trying.

So, it can give you food intolerance only if you're lucky. But you can get candida, infection/co infection...

 

To threat this permeability:

-Kill what is causing it (Avoid bad food with food intolerances check, food that tend to cause this disease, parasites, infection...).

-Heal the permeability

-Help your intestinal flora

 

If you have others symptoms like headach/fatigue:

-Check with a Lung specialist for a 'sleep test' (Sleep Apnea and other issue)

-Check with a Otorhinolaryngology specialist if you don't have earing/noise issue.

-Check with a Dentist if some thing is wrong

-Check with a Neurologist

-See your thyroid test

 

Ok, now you can work on it. Because you live in a $$$$$$ed up country, many of these tests are maybe not covered my you insurance. I'm sorry.

But you have to work on it because even if it doesn't kill you, you maybe will.

Take time with your family. You have to positive on good thing because stress is a big factore in your healing.

I gave you like every test you can do. You will maybe not need to do all of this. It's maybe more simple than that.

If you're GI mock  you and don't help with all of these tests, go see an other person. And before doing the test, never accept anybody saying to you it's in your head.

Make it cristal clear to them.

 

Without threating the cause, you can still try CBD OIL or/and Kratom to help you. The first one is more of an overall (stress, pain, depression) and the last for energy and digestive releave.

Please, don't take any medication that do not HEAL you ! It's a wast of time in the long run. And it will be more complicated to cure later on than now.

Trust me, i took loperamid (immodium) for many years with psy medication for 1.5years. I'm not worst without my loperamid. And my psy medication, with or without it, i'm still bad. So why taking them ? The most importantly to see your progress is BEING YOU. Don't hide behind medication that will help you and give you more side effect.

If natural product give the same effect, but maybe take more time, us them. You will not suffer from side effect.

 

ps: If you have everything negative and taking probiotic doesn't releave you. You will maybe have to concider FMT (fecal transplant) to help you. It's expensive but it's your last chance to this date



#7 Tiffyshea

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Posted 20 January 2018 - 04:23 PM

It sounds to me like you have SIBO, and maybe a problem with your ileocecal valve is the root cause.

 

Here is what I would do if I were in your shoes:

1.  Get a lactulose breath test done.  Not sure if you can get them in Europe, but here's a home test link:     https://sibotest.com...ucts?type=tests
 

2.  Does Germany have Naturopathic Doctors?  I was getting nowhere with my Gastroenterologists here in the states, so I finally just went to an ND, but I looked up one who had good medical training from an actual real Naturopathic Medical School and who was an actual ND.

3.  If you can't find someone, have you considered doing an online session with someone?  Dr. Siebecker, I believe does online visits with people, she is the top ND expert in SIBO.  Her website is siboinfo.com

4.  Research SIBO, www.siboinfo.com and sibo treatment protocols.

5.  There are many alternative ways to treat SIBO.  But it's a super complex problem as the SIBO is usually the result of something else, and walks hand in hand with other problems... a slow MMC is one that is very very common with SIBO, for example, and I feel much much better taking MotilPro It gets your MMC (migrating motor complex, it's the way that your intestines are able to clean themselves out when you aren't eating.  If they don't clean house then it leaves food and bacteria left in the sm intestine and creates an overgrowth of bacteria.

You have to create an entire protocol for it.  I personally like this lady's:  http://diyhealthblog...-recovery-plan/
but also check out the protocols on siboinfo.com.

I have found two herbal antibiotic supplements hugely useful:  Allimed, and Candibactin BR, and AR:  https://www.naturalh...ibactin-br.html
https://www.naturalh...=candibactin AR.

But finding the supplement that is right for you can be exhausting - I've tried many things.

6.  Check to see if you have low stomach acid... in the morning upon first waking up drink a 4-6oz glass of water with a tsp of baking soda mixed in, and time to see how long it takes for you to belch.  If it's in the 2-3 minute range your stomach acid is fine.  If it takes longer it's low.  This can also be a problem that makes SIBO worse.  I take a 4 oz glass with 2 tsp of apple cider vinegar 20 minutes before eating and I still also have to sometimes supplement with HCl.

 

I kind of don't think yours sounds like an HCl problem, but it is a common thing associated with SIBO.

7.  You might try Bravo Probiotic Yoghurt, I just made my first batch today so I don't know how well it'll go.

My personal opinion is that your best bet, although expensive, would be to find a doctor in the states like Allison Seibecker, someone who is an expert, to do an online chat with you.  Or, if you can manage a trip to the states I'd see her or maybe Dr. Pimental in LA, Cedars Sinai Clinic - he invented rifaximin, and holds the patent on it.


A little about me:  My gastro MD told me I was in perfect health and sent me home despite having very extremely bad bloating every time I ate dinner.  I then went to an ND who did many tests on me, including the SIBO test which came out very very very positive (167ppm, when 30 is considered a bad case of SIBO).  Because mine is so high, she told me I'd have to many many rounds of antibiotic treatment.  The herbal antibiotics are not as effective as Xyfaxin, however, and you have to be on the low Fodmaps, which sucks.  I also showed signs of a possible Candida overgrowth, and since I pretty much had one yeast infection after another I pretty much assumed I had SIFO (Small intestinal fungal overgrowth) as well.  So I've been on herbal antifungals and antimicrobials for months.  But I have visited 4 other Gastroenterologists trying to get on Zyfaxin (rifaximin).  I did get one to give me two weeks worth which got me through my honeymoon.  But I think I need a much longer treatment.

All GI docs in my state seem to say this:
That SIBO is very rare and they doubt I have it, and the breath tests are unreliable.

That rifaximin will actually make me feel a lot better, but the symptoms will come back in a month or two as they do with all of their IBS patients.

When I asked, since Rifaximin is an antibiotic that is non-systemic and only functions in the sm intestine, why wouldn't they think that maybe we have SIBO and it's either not being fully killed off by the two week treatment or perhaps there's some other underlying cause allowing bacteria to reproduce in the small intestine, like say a non-functioning Migrating Motor Complex, they usually get mad and tell me that if it comes back that just means I don't have SIBO.  That rifaximin cures SIBO for good and that's it.  If symptoms return it's not SIBO.

They then are completely content to tell me I have IBS, without ever questioning what could be causing the IBS since IBS is really just a set of symptoms, they've told me I will have it the rest of my life, and they send me home.

I hate doctors, I think they are worthless.  They do not give a damn about their patients.  I have never once felt that a doctor actually had my best interest at heart, that they cared about my IBS or SIBO, or that they wanted to heal me or help me find a solution.

It's been a very frustrating thing.  I have done many, many things including intermittent fasting, recording my dreams, and reading "You Can Heal Your Body" by Louise Fay to try to get at any psychological problems that are hindering my progress.  I really want it to be over with, and it's taking some serious time.

More info:
https://chriskresser...-mark-pimentel/
https://chriskresser...-hard-to-treat/
Moderate Alcohol Use in SIBO:  https://www.ncbi.nlm...pubmed/24323179



And lastly, here is some information that was emailed to me from my sister-in-law who is studying to be an ND at Bastyr in Seattle.
 

Small intestinal bacterial overgrowth: Management
Author: Mark Pimentel, MD, FRCP© Section Editor: J Thomas Lamont, MD Deputy Editor: Shilpa Grover, MD, MPH, AGAF

Contributor Disclosures

All topics are updated as new evidence becomes available and our peer review process is complete.
Literature review current through: Jul 2017. | This topic last updated: Jul 27, 2017.

INTRODUCTION — Small intestinal bacterial overgrowth (SIBO) is a condition in which the small bowel is colonized by excessive aerobic and anaerobic microbes that are normally present in the colon. The majority of patients with SIBO present with bloating, flatulence, abdominal discomfort, or diarrhea. This topic will review the management of SIBO. The etiology, pathogenesis, clinical manifestations, and diagnosis of SIBO are presented separately. (See "Small intestinal bacterial overgrowth: Clinical manifestations and diagnosis".)

INITIAL APPROACH — The mainstay of therapy for SIBO are antibiotics to reduce (rather than eradicate) small intestinal bacteria. In addition, some patients require treatment of underlying nutritional deficiencies and associated ileitis/colitis.

Antibiotic therapy — Antibiotic therapy is typically begun on an empiric basis. The selection of antimicrobial regimens is based on the pattern of bacterial overgrowth, the prevalence of risk factors for drug-resistance (recent or repeated prior exposure), relevant antibiotic allergies, and cost [1]. It is unnecessary to repeat breath testing if symptoms resolve with treatment. (See "Small intestinal bacterial overgrowth: Clinical manifestations and diagnosis", section on 'Carbohydrate breath test'.)

Hydrogen-predominant bacterial overgrowth — In patients with hydrogen predominant bacterial overgrowth without excess methane production, we use rifaximin (1650 mg/day for 14 days). Rifaximin is nonabsorbable rifamycin derivative. It is well tolerated and has been demonstrated to be effective in the treatment of SIBO [2-8]. However, the high cost of rifaximin has limited its use.

Methane-predominant bacterial overgrowth  In patients with methane-predominant bacterial overgrowth, we use a combination of neomycin 500 mg twice daily and rifaximin 550 mg three times daily for 14 days [9].

Alternative antibiotic regimens for the treatment of SIBO are listed in the table (table 1). There are few randomized trials of antibiotics to treat bacterial overgrowth and the evidence for use of specific antibiotics is largely from observational studies [2-8]. Studies suggest that clinical response rates may be higher with rifaximin as compared with other antibiotics. In a randomized controlled trial in which 142 patients with SIBO were randomized to seven days of rifaximin (1200 mg/day) or metronidazole (750 mg/day), glucose breath test normalization rates at one month were significantly higher in patients treated with rifaximin compared with metronidazole (63 versus 44 percent).

Correction of micronutrient deficiency — Deficiencies of vitamin B12, fat-soluble vitamins, iron, thiamine, and niacin can be associated with severe SIBO and should be corrected when present. (See "Small intestinal bacterial overgrowth: Clinical manifestations and diagnosis", section on 'Laboratory findings' and "Treatment of vitamin B12 and folate deficiencies", section on 'Vitamin B12' and "Vitamin D deficiency in adults: Definition, clinical manifestations, and treatment", section on 'Vitamin D repletion' and "Overview of water-soluble vitamins".)

Treatment of associated ileocolitis — SIBO-associated ileitis or colitis is usually mild and resolves with treatment of SIBO. However, severe cases require treatment that is the same as for patients with inflammatory bowel disease [10]. The management of Crohn disease is discussed in detail separately. (See "Overview of the medical management of mild to moderate Crohn disease in adults".)

TREATMENT RESPONSE AND RECURRENCE — Approximately 40 percent of patients with small intestinal bacterial overgrowth (SIBO) have persistent symptoms after initial antibiotic treatment [11]. Recurrent SIBO is also frequent after antibiotic treatment. In a study involving 80 patients with SIBO, recurrence rates three, six, and nine months after successful treatment with rifaximin were 13, 28, and 44 percent, respectively [11]. Recurrence was more likely in older adults, those with a history of an appendectomy, and with chronic proton pump inhibitor (PPI) use.

INADEQUATE RESPONSE TO INITIAL THERAPY OR RECURRENCE

Evaluation — We empirically treat patients with a second course of antibiotics if they have continued symptoms or early recurrence (<3 months). For patients with recurrent symptoms ≥3 months after initial antibiotic treatment, we perform a repeat breath test to diagnose SIBO. Patients with no improvement in symptoms after two courses of antibiotic therapy or progressive symptoms should be evaluated for alternative diagnoses. (See "Evaluation of the adult with abdominal pain" and "Approach to the adult with chronic diarrhea in resource-rich settings".)

Subsequent antibiotic regimen — In patients with partial response to recurrent SIBO, the choice of antibiotic therapy should be guided by the patient's initial treatment regimen. Antibiotics included in the initial regimen should generally be avoided. However, patients with an inadequate initial response or recurrent SIBO after treatment with rifaximin can be retreated with a two-week course of rifaximin [12]. Alternative antibiotic regimens are also summarized in the following table (table 1). Compliance with antibiotic therapy should be reinforced.

Elemental diet — We reserve the use of an elemental diet to patients who cannot tolerate antibiotics or have failed to respond to antibiotic therapy for SIBO. Limited observational data suggest that an elemental diet can induce remission of symptoms in patients with SIBO. However, elemental diets are expensive and compliance is limited by palatability. In a retrospective study, 124 patients with methane- or hydrogen-predominant SIBO were treated exclusively with elemental diet for at least two weeks [13]. Patients continued the diet for a total of three weeks if the breath test did not normalize by week two. At two weeks, 74 of 93 patients (80 percent) had a normal breath test. Five of 19 subjects who were treated with an elemental diet for an additional week had a normal breath test by day 22 for a cumulative response of 85 percent. Patients who normalized their breath test had a significant improvement in symptoms as compared with those with persistently abnormal breath tests (66 versus 12 percent). Fourteen patients discontinued the elemental diet and were excluded from the analysis.

PREVENTION OF RECURRENCE

Treat the underlying etiology in all patients — All patients should receive therapy directed against the underlying etiology of SIBO (table 2). As examples, medications that can decrease intestinal motility (eg, narcotics, benzodiazepines) or cause achlorhydria should be avoided when possible. Prokinetics are a useful adjunct in patients with SIBO due to an underlying dysmotility. In the case of iatrogenic surgical causes of SIBO and for fistulas between the proximal and distal intestine, surgery may be necessary in patients who fail to respond to antibiotics and have significant weight loss and diarrhea. Patients with dilated segments of bowel with poor motility may benefit from intestinal tapering procedures. (See "Small intestinal bacterial overgrowth: Clinical manifestations and diagnosis", section on 'Evaluation to determine the etiology'.)

Antibiotic prophylaxis in selected patients — Antibiotic prophylaxis for SIBO should be reserved for patients with ≥4 distinct and well-documented episodes within one year and risk factors for recurrent SIBO (eg, short bowel syndrome, jejunal diverticulosis). In such patients we administer antibiotics on a periodic basis (5 to 10 days out of every month or every other week). Antibiotics are changed to prevent the development of resistance to a specific drug. The frequency with which antibiotics are rotated varies from monthly to every six months.

Interventions with unclear role

Low FODMAP diet — Fermentable oligo-, di-, and monosaccharides and polyols (FODMAPs) are short-chain carbohydrates that are poorly absorbed and are osmotically active in the intestinal lumen where they are rapidly fermented by small intestinal bacteria. A diet low in FODMAPs improves bloating and gas in patients with irritable bowel syndrome, however, evidence to support a low FODMAP diet in the prevention or management of patients with SIBO are lacking. (See "Obesity in adults: Dietary therapy".)

Probiotics — There are limited data to support probiotics in the treatment of SIBO [10,14-17]. In a 2017 meta-analysis that included 18 studies there was no significant difference in the incidence of SIBO in patients on probiotics as compared with the control group [17]. Patients with SIBO who were treated with probiotics had higher rates of gut decontamination and decrease in breath hydrogen concentration and abdominal pain but there was no significant improvement in diarrhea.

Statins — Statins have been shown to inhibit growth and production of methane in several Methanobrevibacter isolates [18]. However, studies in patients with SIBO are lacking.

SUMMARY AND RECOMMENDATIONS

Small intestinal bacterial overgrowth (SIBO) is a condition in which the small bowel is colonized by excessive aerobic and anaerobic microbes that are normally present in the colon. The majority of patients with SIBO present with bloating, flatulence, abdominal discomfort, or watery diarrhea. (See 'Introduction' above.)

We suggest antibiotic treatment for SIBO with rifaximin (Grade 2C). In patients with methane-predominant bacterial overgrowth, we use a combination of neomycin and rifaximin. Adequate antimicrobial coverage can also be achieved with other antibiotic combinations (table 1). Deficiencies of vitamin B12, fat-soluble vitamins, iron, thiamine, and niacin are usually associated with severe SIBO and require supplementation when present. (See 'Antibiotic therapy' above.)

Approximately 40 percent of patients with SIBO have persistent symptoms after initial antibiotic treatment and 40 percent have recurrent SIBO within nine months of antibiotic treatment. (See 'Treatment response and recurrence' above.)

We empirically treat patients with a second course of antibiotics if they have a partial improvement in symptoms or early recurrence (<3 months). For patients with recurrent symptoms ≥3 months after initial antibiotic treatment, we perform a repeat carbohydrate breath test to diagnose SIBO. (See 'Inadequate response to initial therapy or recurrence' above and 'Evaluation' above and "Small intestinal bacterial overgrowth: Clinical manifestations and diagnosis", section on 'Carbohydrate breath test'.)

Patients with persistent symptoms after two courses of antibiotic therapy or progressive symptoms should be evaluated for alternative diagnoses. We reserve the use of an elemental diet to patients who cannot tolerate antibiotics or have failed to respond to antibiotic therapy for SIBO. (See 'Evaluation'above.)

All patients should receive therapy directed against the underlying etiology of SIBO (table 2). We reserve antibiotic prophylaxis for SIBO for selected patients with multiple recurrences of SIBO and risk factors for recurrence (eg, short bowel syndrome, jejunal diverticulosis). (See 'Prevention of recurrence' above.)

ACKNOWLEDGMENT — The editorial staff at UpToDate would like to acknowledge Jon Vanderhoof, MD, and Rosemary Pauley-Hunter, NP-C, who contributed to an earlier version of this topic review.

 




 



#8 wgbutler

wgbutler

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Posted 21 June 2018 - 06:34 PM

Any update here?  How are you doing WinterStorm?  I read your story and the whole account ripped my heart out!  Please tell me that you are all right!







Also tagged with one or more of these keywords: sibo, ibs, fodmap, weight loss, depression, bloating, gas, pain


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